Determined to Break the
Silence
This story comes from Lisa and Sydney Edmond.
I asked Lisa if she would share their inspiring story with
the visitors to the Autism Coach web site and she generously consented
to do so. Sue Bennett, Autism Coach
One
of Sydney’s favorite pictures of herself,
a beautiful ballerina.
“I want to talk more than anything in the
world. I expect I will,”
spells out Sydney on her letterboard.
Sydney Edmond will be 11 years old this month and cannot speak
but she has been taught to communicate with a letterboard within the
last year. Never having
been able to communicate with words before, it turns out she has a lot
to say. According to her
mother, whenever they visit a doctor, Sydney spells out, “I want to
talk.”
According to Lisa, Sydney’s mother, Sydney was
“cheerful, playful, clever, healthy and beautiful” until autism
struck after Sydney’s DPT/MMR which was administered at 15 months.
The only unusual symptom her parents had noticed prior to the
15-month immunization was low muscle tone (hypotonia).
She had a vocabulary of 6 or 7 words which disappeared after the
vaccination, never to return. Sydney
was trained to use the Picture Exchange Communication System (PECS),
which she responded well to, but communication was very basic. According to Lisa, “We managed to ask Sydney what she might
want from a selection of pictures, but never her goals and dreams, her
thoughts, her sense of humor…”
Then on January 16, 2003, Lisa and Sydney’s world
changed. Lisa viewed
a segment on 60 Minutes II about Tito Mukhodpadhyay, a young man
originally from India, who is severely autistic and cannot speak.
In spite of his inability to communicate verbally, Tito is a
gifted poet and writer, taught how to write by his mother, Soma. Soma has pioneered an approach of breaking the communication
barrier with many children and adults within the autism spectrum that
she calls the Rapid Prompt Method.
Tito is not the first to autistic person with the ability
communicate through writing, but Soma’s intensive approach may be
amongst the first of its kind to be closely studied and refined with the
intent of creating a methodology to help others.
Unlike many educators who try to slow things for autistic
children, Soma talks constantly and demands rapid responses, which she
says prevent the child from being distracted.
Lisa began to emulate Soma’s approach, as
she had seen on 60 Minutes with Sydney, obtaining flash cards with
letters and numerous materials, including a variety of children’s
computer programs to teach letters.
Initially, Lisa would ask Sydney to touch or point to the letter.
Lisa at first guided Sydney’s hand to the letter and gradually
just would touch her arm, and eventually just her shoulder.
Lisa then began building word recognition by using flash cards of
three letter words where you bring the three letters together to make a
picture and the letters that named the picture (such as cat, dog, cow).
Lisa would ask Sydney to point and her pointing became stronger
and stronger. During breaks, Lisa would read constantly to Sydney.
Lisa made a letterboard like the one demonstrated on 60 Minutes
and gradually taught Sydney to point to letters on a board to spell a
word. A letterboard is
simply a piece of paper with the letters written on it in black ink.
Soma had used the ABC format for Tito when they lived in India:
A
B C D E F G H I J K
L
M N O P Q R S T U
V
W X Y Z . ! ?
0
1 2 3 4 5 6 7 8 9
Here
in the U.S. where so many children have access to computers and
keyboards, some parents use what is called the QWERTY format. This
is the format used on the computer or typewriter keyboards and looks
like:
Q
W E R T Y U I O P
A
S D F G H J K L
Z
X C V B N M ! . ?
0
1 2 3 4 5 6 7 8 9
Lisa had learned from an educational
consultant that many children respond better to white letters on a black
background and so made a new letter board with this format, with a navy
blue background, white consonants and yellow vowels and numbers.
Sydney responded well and spelled out that she liked it
and told Lisa she could read it more easily.
Eventually Lisa was able to visit the Carousel
School in Los Angeles, where Soma works to watch her demonstrate her
method so Lisa could fine tune her approach.
Soon afterwards, Soma agreed to do an evaluation of Sydney and
became Sydney’s teacher. Soma
worked with Sydney without touching her body, demonstrating that she was
capable of communicating with only minor facilitation.
Sydney currently works with Soma once a week for 45 minutes. According to Lisa, Soma varies her approach from child to
child, depending on how she assesses the individual child’s sensory
issues.
When asked how Soma has helped her, Sydney
responded on her letterboard, “By showing me some ways to communicate. Soma is my teacher. Mom
is my teacher, too. They
are my friends. They are my
best buddies! I am so happy
and proud!”
Once Lisa built a foundation of letter and word
recognition, she established communication with Sydney by beginning with
simple questions requiring a Yes or No answer to ensure confidence. Next, she began to ask questions requiring only a one word
answer, such as “What is your favorite color?” and then would chat
to make it conversational. These
sessions were always informal, always taking into account Sydney’s
level of comfort because Sydney, as is the case for many children with
autism, can be overwhelmed by sensory issues.
Suddenly there came a major breakthrough, Sydney’s first
self-initiated statement on the letterboard.
“My own pizza, please,” she spelled out when she saw her
brother had gotten his own. Lisa
immediately jumped in the car to get her daughter that pizza!
Lisa continues, “Since that time, Sydney has
asked for clothes when we’re out shopping, selected her own shoes,
named her own kitten and various toys and dolls, requested ballet
lessons and told me exactly how she wanted her hair cut.
I can’t say which one of us is more in heaven; probably both of
us!”
Today,
Sydney points to letters on her letterboard to spell out what she
has to say. Lisa generally holds it for her or has it on an
easel in front of her. At this point, Sydney can often spell
out short answers without any facilitation.
However she generally does better if Lisa’s hand is on her
shoulder. Soma is able to facilitate Sydney’s spelling by merely touching
Sydney on the leg as she sits near her side.
Lisa and
Sydney take the letterboard with them everywhere.
Lisa has made up a couple with handles on them so that the
letterboard can be carried in hand or over the shoulder.
On walks, they chat amongst themselves or with their neighbors.
According to Lisa, “When we go shopping, we are able to ask her
if she would like anything or if I’ve forgotten anything we needed.
In restaurants, she can tell me what she’d like to eat.”
Although
Sydney’s parents are divorced, Sydney takes her letterboard with her
when she visits her father and is able to use this communication with
him.
He has also been supportive and cooperative in this intervention which
has been very helpful in getting Sydney to generalize her skills.
Both parents feel it's important that Sydney uses this method of
communication with as many people in her life as possible.
Sydney
loves to be read to by her mother.
One of her recent favorite books was the story of Helen Keller,
which Sydney was so taken with and inspired by, that she didn’t want
to stop reading - they read
through this book in a very short time.
She is currently enrolled in a ballet class, which she loves, is
learning to write independently and has shown strong abilities in math
and science.
Sydney
still cannot speak, although she is working on sounding out vowels and
consonants, and still has significant sensory processing issues.
As Lisa says, “If she is seeing something, she is not
hearing it and if she is hearing something, she is not seeing it.
Neither can she process tactile information along with visual.
This makes fine motor tasks such as writing and puzzles quite a
challenge.”
According experts in autism, it appears as if the
inability to store and retrieve sensory information in a synchronous and
connected fashion may be an significant underlying issue in autism.
When a neurotypical person receives information from the outside
world, information from all of the senses simultaneously comes into the
brain and are merged into a single picture. Sensory information relating
to a single memory is simultaneously stored in separate locations in the
brain for each sense. When a neurotypical person retrieves a memory, the sensory
information previously stored is recombined as a single memory when the
information is retrieved.
However, with an autistic person, all sensory
information does not come in at the same time and is not stored
simultaneously. There is
typically a timing delay in hearing or another sense, causing
information obtained about the outside world to be stored in a
disconnected fashion within the brain. The hearing part of a memory may not be linked to a seeing
part and vise versa. This
may lead to compartmentalized thinking, difficulty in generalizing
frequently and making connections as the internal architecture of
organizing information as fragmented and disconnected as the information
it receives.
According to Sydney, herself, when she is receiving
new information, “Sight comes
before sound, but I hear better when I don't look.
I learn best by listening."
When asked how she remembers information, Sydney responds, “I
remember everything but not at the same time. I remember sounds
first and sights last.”
Researcher, Terry Sejnowski ponders, “How does
the brain represent time and how do signals in different parts of the
brain that maybe occur at different moments in time, how is that
information integrated together? We’re
beginning to appreciate that internal time in the brain can be used for
things like attention. That’s to say, your expectation of where a
signal is coming from in space, or through temporal synchrony, the
firing of neurons together at the same time.
If these theoretical ideas are true. . .it means that some
diseases like autism may be diseases of timing signals of the brain.”
Also, worthy of note, although many autistic
children have difficulty in processing sound as language, their ability
to process sound as music is unimpaired.
Apparently Sydney loves music, Lisa frequently plays music for
her. Her favorite is Mozart, however she also enjoys James Taylor.
Sydney has communicated to Soma that she composes and replays
music in her head although she does not sing out loud.
Teaching children with sensory processing
difficulties such as Tito and Sydney to communicate will undoubtedly
shed more light on how autistic children think and perceive their world,
leading to better understanding of and improved treatments for autism.
When asked how she felt before, during and after
using Soma’s approach, Lisa replied, “I kept reading about miracles
happening here, there and everywhere with other autistic children which
thrilled me no end, but I so wanted a miracle for my own little girl.
It was disheartening.” Lisa
has one word to sum up her feelings as to how she feels since her
daughter has responded to Soma’s approach, “Elated.”
As of this writing, Soma is not available to teach
new students, but she and Cure Autism Now, the organization that has sponsored her and Tito in the United States, are working on refining her
approach and making it available to parents.
Soma also periodically travels and gives seminars on
her approach.
Related links about Tito and Soma are as follows:
60
Minutes News Article on Tito and Soma
on-line article about the show
http://www.cbsnews.com/stories/2003/01/14/60II/main536416.shtml
transcript
http://hunter.apana.org.au/~cas/ozinfo/2003/03-01/msg00012.html
Good
Morning America Show on Tito and Soma
http://abcnews.go.com/sections/GMA/GoodMorningAmerica/GMA030116Autism_series_one.html
PBS
Closer To Truth show on autism with video clips
http://www.pbs.org/kcet/closertotruth/explore/learn_03.html
http://www.pbs.org/kcet/closertotruth/explore/show_03.html
Cure
Autism Now (CAN) -
Downloads of Titos’s writing available here.
www.canfoundation.org
National
Autistic Society of the United Kingdom
http://www.nas.org.uk/mediacen/newrel00/tito.html
New
York Times Article
http://www.fathersnetwork.org/791.html?page=791&SESSION=1deac1e30ce82f9358b54d170826b4a5&s=0
